Great News!!

Dr Superneau's office called this morning....Elise's remaining MPS test was normal too!!! Fantastic!! She is doing so well....except for her adjustments to all the chaos at home...hopefully we can keep things as normal as possible for her to keep the tantrums to a minimum. :) Her teacher at BR Speech and Hearing today said that she has been doing very well...lots of talking! She said that she sometimes has trouble understanding her...that is to be expected. But, she was not doing near as much talking in her MDO class...I am soooo glad she feels more comfortable there. It is great for her! One thing is for sure....she knows exactly what she's saying every time she talks...she repeats the same unintelligible sounds over and over. The good thing is that she is getting a little less frustrated with it (at least sometimes....when she's not already in a sour mood)...she is starting to laugh at us sometimes as we try to figure out what she's saying...I'll ask her to repeat it over and over again, then I guess what I think she's saying..everytime she says, "No." Yesterday, I sent her to Audrey and then to her daddy to see if they could figure it out...she just kept repeating the same thing each time and smirking at us all because we didn't know what she was saying...it became sort of a game...not very good speech therapy, but it was funny. :) I'm not sure that we ever figured it out...

Appt with Dr Lutfallah (endocrinologist) today...
We will continue Lydia on the half dose of Levoxyl and check her levels again in April...we will see the dr again in May. She tried to explain to me again the details of Lydia's thyroid issues...I understand it a little better now....though I don't know if I can explain all of it....? Lydia does NOT have hypothyroidism because her T4 level (from the thyroid gland) has never been elevated...her TSH (from the brain...tells the thyroid gland how much thyroid hormone to produce) has been elevated, which suggests that her thyroid gland is not producing the right amount of thyroid hormone, and her brain is working too hard to keep it level. It is called non-specific TSH elevation...Dr Lutfallah expects that Lydia's thyroid issues will resolve and that she will NOT develop Hypothyroidism...she said it is fairly common....they see it a lot in babies, but they usually stop taking the medication by age 3. The reason they continue it until then is because it is so critical to brain growth and development. After age 3, they will stop the meds and test levels to be sure that she doesn't still need it. She told me the normal ranges for the levels and Lydia's levels each time they were checked...she has been right on the border each time, so her levels haven't really been very detrimental.

We will see Dr Wood tomorrow for our follow-up to the hospital stay, and we will re-check the urine culture (catheter) to be sure that the UTI has been resolved. It will take 48 hours for results, so we expect to get results by Friday when the case manager from Atlanta will call us to be sure that Lydia is free from infection, fever, sickness, etc. Thank goodness my grandmother is staying with us a couple of days...she'll stay with Elise at LSU while Audrey and I take Lydia to the dr...then we'll pick them both up to come home for an Early Steps meeting for Elise and Lydia. Maw-maw Grace is also great at doing laundry....lucky for us!! :)

Lydia's eating is still about the same...much better than last week...still not as good as I hope for it to get.